ARFID - when eating is no pleasure

„When he gets hungry, he will eat it.”

"Give him to me for a week, I'll teach him how to eat!"

"No child has ever starved to death at the set table."

If as a parent you've heard similar wisdom many times and felt bad about it, although common sense tells you they're right, experience contradicts it all. No, he won't eat it, no matter how hungry he is, and he'd rather not eat anything if it's not something he likes.

What is ARFID?

The acronym ARFID comes from the English Avoidant Restrictive Food Intake Disorder. It was introduced as a new diagnostic category in 2013 in the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders. ARFID is an eating disorder that can present at any age, is associated with extreme pickiness, eating behaviours may be associated with fears and phobias, and unlike other eating disorders (anorexia nervosa and bulimia nervosa), no body image disturbance is present. Three types are distinguished, but recent research suggests that all three characteristics are present in children diagnosed with ARFID, albeit to varying degrees.

In the first type, the leading symptom is a lack of eating or interest in food. In the second type, the rejection of food because of its different characteristics (smell, taste, texture, colour, touch, etc.) is the most prominent feature, and is typical of those who also have some sensory sensitivity. Finally, anxiety about eating food can also be a problem, usually based on some negative experience related to eating, such as vomiting or choking.

One or more of the following criteria may be present:

- Significant weight loss or failure to gain weight in line with age

- Nutritional deficiency

- Dependence on nutritional supplements

- Disturbance in psychosocial functioning, e.g. inability to eat in unfamiliar surroundings, in a community

- Other illness or lack of access to food (e.g. due to poverty) does not explain behaviour

- No body image disorder present

- The disorder is not better explained by another mental disorder and cannot be attributed to another health condition

The disorder is also a relatively new addition to the 'vocabulary' of professionals and seems to have an even more difficult transition into the public consciousness. Many people still attribute it to fastidiousness, coddling, a failure of upbringing, which can be cured with the right attitude and consistency. Parents often don't even think about asking for help because they themselves believe that the symptoms will go away, or, on the contrary, that they can't be helped. Many parents report fluctuations in their ability to tolerate the disorder, with better and worse periods, but all agree that this eating disorder, like others, places a huge burden on the family and parents.

Most young children go through a period of picky eating sometime between the ages of 3 and 6, which is part of normal development and is not accompanied by weight loss or the need to take supplements. However, children with ARFID are much more picky, typically eating only 5-10 foods, with the most recent literature suggesting up to 20. The "safe" foods are often beige in colour: empty noodles, rice, biscuits, bread. Some children with ARFID do not seem to be interested in eating, they don't really feel hungry, or if they are, they don't care much. They stick to familiar, known foods and brands, they can't be fooled because they can sense with incredible accuracy if the food is not what they accept. Many children with ARFID are particularly sensitive to taste, according to research. They also prefer to eat their safe foods mainly on their own, not mixed together, so they typically don't eat sandwiches.

What causes the disease is not yet known. As anxiety disorders, autism spectrum disorder and ADHD are common in addition to ARFID, it is assumed that there is a genetic background, but further research is needed to explore this. The reaction of the wider and immediate environment is also a very important factor in the development of the disorder, but ARFID cannot be "induced" if there is no predisposition in the child. If a child with an average pickiness is not forced to eat, sooner or later his repertoire will expand on its own, he will try new tastes. However, forcing a child with ARFID to be flexible and try new foods will have the opposite effect.

The onset and course of the disease can also vary, each case is different, so the treatment plan should also take individual differences into account. There are cases where the child ate an average amount for a while and then, as a result of some event, started to restrict his/her food intake, but there are also cases where the child has only accepted a very small number/type of foods in the first place.

Little is known about its prevalence, as it has only recently emerged as a separate disease category, but it appears to be relatively common in children, adolescents and adults, and is becoming more common. Preliminary estimates suggest that 5% of children are affected, but 63% of professionals working with children are unaware of the disease. This makes it crucial to raise awareness of the disease among both professionals and parents, as it can help those who need it to get to the right specialist and receive treatment. Eating disorders left untreated can often lead to other serious illnesses, as is the case with ARFID. In addition to various nutrient deficiencies, there are digestive and absorption problems, osteoporosis, short stature for age, delayed puberty, delayed menstruation in girls, dizziness, low blood pressure, low pulse, dehydration.

Eating disorders cause an incredible amount of psychological stress for both the patient and their family. During the COVID-19 pandemic, the prevalence of anxiety and mood disorders, as well as eating disorders, has also increased. In many cases, parents feel helpless and blame themselves in the absence of a proper diagnosis.The relative lack of knowledge of the disorder leads to under-diagnosis and, if diagnosed, may lead to rejection.

It is more common in boys. Diagnosis is difficult as only a few specific measurement tool and questionnaire has been developed for this disease. It is important to stress that low body weight is not necessarily an inherent feature of the disorder, as the child may be normal if he or she eats enough of the foods he or she can accept, but may also be severely deficient in vitamins and nutrients due to the limited number of foods.Similarly, giving the child vitamins and supplements as a preventive measure may mask the true extent of the disorder.

Treatment options and therapy

In most cases, treatment starts with a psychological assessment and, in many cases, a parallel medical examination. This is important because there may be underlying physical conditions such as reflux disease, food allergies or sensitivities, digestive problems, which may play an important role in the development and maintenance of the disorder. Identifying and treating these is of paramount importance in improving the quality of life of the patient and their family, and restoring a sense of control as much as possible.

In many cases, therapy requires the collaboration of several professionals, from doctors, psychologists and psychiatrists to dieticians and behavioural therapists. Research so far shows that complex therapy that takes into account individual differences can be successful. However, in the case of ARFID, there is always a question of what is considered successful therapy, as it makes a big difference where treatment starts. In the case of a child who is only willing to eat one type of pudding at the start of treatment, an increase in the number of foods accepted by one or two may be considered a success. If weight is very low, the focus of treatment should be on increasing it at the beginning.Likewise, if the weight is normal and there are no nutritional deficiencies, but the family and parents feel that feeding the child is great difficulty, the goals of therapy will be different.

Treatment can take the form of individual and/or family therapy. Psychoeducation and support groups for parents of children with eating disorders are also very effective.

Among the treatment options, behavioural therapy can play an important role, e.g. systematic desensitisation, where the patient is introduced to different foods in a playful way, not centred around eating, or operant conditioning, where verbal or physical rewards are given for trying new foods. However, results so far are mixed, and we are not sure which method is most effective.Interestingly, in many cases, children who had previously been forced to eat new foods by their parents chose individual therapy rather than family therapy when given a choice.

Things to avoid

Forcing your child to try foods, pushing them in different ways will not get you results. In fact, it will have the opposite effect: it will increase the child's anxiety and fear, and he/she will accept even less food.This vicious circle makes mealtimes increasingly frightening, not only for the child but also for the parents.

Similarly, it is not a good course of action to accept extreme dietary restriction, as this can have serious health consequences, but it is also psychologically unhealthy for the child, as it can lead to a lack of positive social experiences in later life and an increasingly restrictive diet.

What can we as parents do to help our child?

If you feel that your child is becoming more picky than average, you are worried about their development or if eating is causing them increased stress, it is important to seek professional help to determine what you are dealing with. As ARFID often co-exists with other conditions, it is important that these are investigated and an accurate diagnosis is made.Increasing knowledge about the disease, seeking psychological help, group therapy can also be effective for parents.

For children with ARFID, eating new foods can be associated with a high level of anxiety and genuine fear, so it is crucial to validate these feelings as parents.Let them know that we are aware of how difficult this is for them and that what they are feeling is real, but at the same time encourage them as this is the best way to help the process. It is important to be patient.ARFID usually starts in childhood, but very often it lasts into adulthood.Trying new foods and accepting them is not a quick process, they usually move forward in tiny steps with frequent setbacks, which can be incomprehensible and frustrating to an observer.Be aware that this is a scary experience for them and it takes time to become comfortable. With new food trials. The third aspect is to allow them to make choices about what foods they try. They are much more likely to try a food if they are interested in it than if we try to force it on them.Fourthly, increasing knowledge and support for ARFID can also be very effective.

Some advice for parents of children with ARFID:

Provide at least 2-3 meals and 2-3 small snacks a day for your child.

Give them foods that they like, make meals relaxed and try to rebuild positive experiences with food.

Take into account 'sensory satiety', have a variety of foods on offer with as many ingredients as possible.

Try to introduce new foods outside the usual ones, but reduce the pressure on them to like them, focus on discovering the qualities of the new food (smell, taste, texture).

It is typical for children with ARFID to have to try a new food at least 10-15 (or even more) times before they will accept it.Always start with a small amount.

If you want to introduce a new food into your child's diet, always start with something very similar to the food they like, consider their safe foods in new flavours or different brands.

Resources

https://theconversation.com/amp/arfid-the-eating-disorder-that-makes-people-fear-food-152126

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6281436/

https://link.springer.com/article/10.1007/s40519-022-01415-5

https://www.eatingdisordertherapyla.com/arfid-parent-support-group/

https://www.eatingdisordertherapyla.com/supporting-your-loved-one-with-arfid/#more-3127

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1242188600